Low Platelets with Myelodysplastic Syndrome (MDS)

Sharyn, it’s good you’re on the antibiotics. But if you don’t notice an improvement in another day or so, let your doctor know. They may need to run a blood culture so that the appropriate antibiotic can be targeted to the bacteria.
The abscess is troubling. Can you have this drained? The UTI alone can make a person positively wretched, but combined with the bacteria of the abscess, this is giving you a double whammy. Part of why you’re feeling so ill is because of these infections. Do you have an elevated temperature?

I don’t know which MDS you have and speculating isn’t helpful. MDS is a type of blood disorder where your bone marrow doesn’t produce high enough levels of mature red blood cells, white blood cells, or platelets. In your case it’s apparently the platelets? What are your other blood numbers like? Are they marked high or low on the CBC results? Infections such as sepsis can lower platelet levels. You may find when your infections have been treated the platelet level might rise again.

Waiting until your platelets are at 10,000 is low… At that point my hematologist and I would joke about giving up knife juggling for a while.
What does your hematologist have in mind when you drop to 10,000? Transfusions?

I’m sorry you’re feeling so awful. I really do hope you tell your family soon that you’re ill and that you have MDS. Provide them with the information so that you can discuss it together. As moms, it’s always our goal to shelter our kids from stress. But this is different. From my own daughter’s perspective, she’d have been crushed had she not known from the beginning of my disease so that she could step up to help out! It also helped her process what I was going through. She jumped right in with both feet, even though she lives 5 hours from me. It made her feel useful with finding me cute headwear, searching for foods that might be palatable when I was on chemo, babysitting me during transplant when my husband needed a break, etc.. Honestly, it gave her purpose instead of feeling sidelined. Otherwise it would have left her feeling alienated and distant. Give your kids a chance to show you how well you did raising them! Do they live near you?

I thought I would share my experience which I am grateful that my only symptoms at this time is the fatigue and the bruising. When my platelets reached 64 they had me do the bone marrow biopsy. I got the results and there were two mutations. SRSF2 gene and TET2 gene mutations. I was able to research those out to tell me my diagnosis before I went to the second oncologist specialist. His diagnosis was MDS and we are doing blood work every 2 months. Several things I could be looking at down the road, chemo is one, but for now it is watch and see. My platelets currently run from 70 - 80 with the red and white both run low. I have good days (engery) and bad days. Today I am tired but tomorrow I may feel find. Prayers for you and your health.

hollie

I was diagnosed with low platelets and MDS in 2012 and my local transplant oncologist advised me to do an unrelated donor stem cell transplant immediately. Instead, I travelled for a second opinion and decided to wait and watch. MDS turned into AML and I did the transplant, placing me in remission for the last decade for both AML and myeloma, which I’ve had since 1992. I posted 4 minute YouTube videos of our lessons learned. Search 30 year myeloma survivor patient 007. Below links to the latest episodes; click videos at top to see all episodes
https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg

My husband was just diagnosed with MDS, and probably needless to say we are at a loss. I've been doing research and am glad I found this thread. I forced him to go to the ER 2 weeks ago bc he appeared to be getting more winded just climbing up and down the stairs. That's when they did the CBC and found that he has pancytopenia. He has a second opinion evaluation next week, and had another CBC panel done yesterday. His platelet count dropped from 35 to 30, but the hematologist is not concerned and said he doesn't need anything prior to the visit next week. Should I be concerned? I left a message for the doctor but haven't heard back yet. Thoughts?

My platelets are down to 3
Doctor is considering adding platelets via IV. Are you seeing a hematologist I assume?

Hi @eibsee1948, Welcome to Connect. My goodness, you have a platelet level of 3? That’s dangerously low. Platelets are typically reported in microliters with a multiplying factor of 1000. So your number is probably 3,000. Anything between 10,000 and 20,000 is considered a serious bleeding risk.

It’s a good idea to have a platelet infusion to help bump your level up to a less serious category but that’s a short term solution. The question is why are your platelets so low? Do you have Myelodysplastic Syndrome (MDS) or another blood disorder?

Hi @shels93. I’m so sorry I missed your post earlier. It’s really frightening when you get news such as your husband’s. It clips you right off at the knees. The good news is that his doctor is on top of this now and he’ll be getting the help he needs.
His blood at 30 is in reality 30,000. It is low but it is still not dangerous and he should ok until his next appointment in a week. Just use caution when handling knives…my hematologist would tell me to stop practicing my knife juggling act for a couple weeks…I appreciated his sense of humor. 🙂
Welcome to Mayo Connect. As you found, there are a number of members in the same boat as your husband. We all gather together around our ‘kitchen table’ to help each other out. Will you let me know how his appointment goes?

Recent prostate surgery, radiation treatment and chemo therapy are what is causing low platelet, confirming with hematologist

@loribmt thank you! After rereading my post I realized I forgot to include the fact that I first reached out to his cardiologist about the breathing as he had a heart valve replacement 3 years ago; they are the ones that said he needed to go to the ER (I don't want to come off as a hypochondriac). I did realize the 30 was 30K but that number just scares me. I'll let you know how it goes; thank you again so much.

@shels93, You’re most certainly not a hypochondriac. You saw the urgency in your husband’s condition and it’s commendable you reached out to his cardiologist right away. As a wife, I know sometimes it takes Herculean effort to get our guys to head for the doctor. They tend to ‘just tough it out’…so, good for you. 🙂

Myelodysplastic syndromes (MDS) are a group of blood disorders characterized by abnormal development of blood cells within the bone marrow. There are several types of MDS so your husband’s hematologist will help to narrow down his specific type so that he can begin some treatments to slow the progression.
I’ve provided the Mayo Clinic’s informational page on MDS just to help inform you a little more about the disease. From experience, I know that reading some of the information can sound a little daunting. Not everything you read will apply to your husband but this will give you a little overview until you meet with his doctor.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
You husband will most likely have a few more blood tests and possibly a bone marrow biopsy coming up to help get a more exact diagnosis.
It can be tough when first diagnosed to even know what to ask the doctor. Since I’m expecting this will be his (and your) first visit with the hematologist, I thought I’d give you a link to some conversations about How to get off to the best start with a new specialist.

Your Tips on How to Get Off to the Best Start with a New Specialist: https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

How’s your husband feeling about all of this?